Awaiting a neuro appointment and wanted to say hi. TL:DR at bottom.
(I’m not trying to get anyone to give me a medical opinion on what I’m feeling, and fully understand that they occur in multiple conditions. I just wanted to maybe exchange a few lines with others experiencing similar sensations.)
I used to have migraines with visual aura of a blue flash in the top left area of my vision. Over the last year or so I’ve been getting that plus other flashes in both my left and right peripheral vision but haven’t had a migraine in 5 years.
There’s some scarring in my right retina next to the optic nerve that I see a consultant about every 9-12 months. It was diagnosed about 5 years ago I think. The consultant believes that some sort of oedema caused the scar but they don’t know what causes the oedema. The scar hasn’t changed in all the time it’s been monitored.
Before Christmas I started to feel tingling and pins and needles in my left hand, which felt very much like some pinched nerve symptoms but without the pain. It gradually spread in my arm and leg and also into the left side of my face and neck. In the last week it’s started to occur on my right side too, plus I can occasionally feel it in my scalp and in a couple of patches on the left side of my back. It’s always a stronger sensation on my left side. Yesterday there was an odd, uncomfortable sensation in my arm when I was exercising, like pins and needles concentrated and travelling quickly along a 6” patch of my forearm, almost like the tingling you get from bashing your funny bone but again without the pain. I stopped exercising for the day and the sensation stopped and hasn’t returned.
About a month ago I was sitting at my desk at work, completely awake and typing an email, when I felt as though there had been an earthquake. In my perception everything but me moved one foot to the right then back again. I checked the British Geological Survey website but nothing happened on that day, and nobody else around me felt it.
I had insufficient iron levels due to blood loss earlier this year (being treat for PCOS, which caused the bleeding) and took a course of iron tablets for that, and my most recent tests show my vitamin d is 31 whereas the doctor would like it to be around 50, so I’m taking 4000ug of vitamin d per day for that. All other tests have been inconclusive so far – blood glucose and hormone levels are normal, no trace of antinuclear antibodies, etc. In the last few days a virus-y fatigue has set in with me wanting afternoon naps and an early bedtime every day.
My mother and brother both have dermal autoimmune conditions and I was diagnosed with one a few years ago, but it’s not affected me for quite a while, and both my parents have neurological conditions (epilepsy and Parkinson’s). My sister and I both have ADHD.
I’m doing my best to make sure I eat well, drink plenty of water, get a decent amount of sleep, exercise and keep my stress levels low. My manager at work has a chronic condition so he’s really good whenever I need to see a doctor. or go to the hospital.
It’s just really worrying, you know?
Just looking for some empathy, or any advice that could be passed along.
Flashes of light in peripheral vision
Scar on retina
Tingling / pins and needles / numbness spreading
Vitamin D levels 3/5 what the GP would like, all other levels normal.
Autoimmune and neuro conditions in direct family
Waiting for neuro appointment, not sure of wait times but could be as long as mid-August before I’m seen